Hello Blog. It’s been a long time. Last time we talked I was complaining about
how very hard it is to have a fancy car with fancy broken parts that was
engineered in a somewhat short-sighted fashion. And that’s all well and good
but the rest of this year has been a huge mess and I’ve been avoiding writing
anything about it. I should get it out there though so here goes.
One night in the middle of April my dad was not able to sleep because of
serious pain in his back. He has had back problems most of his life which I
inherited from him but this was different and after not being able to sleep all
night he went to the emergency room. They decided it was probably kidney
stones but the routine blood work turned up a white blood cell count of around
100,000 per mcL. Normal is between 4.5k and 10k. At this point the head of
oncology, who happened to be on call, came by and made him an appointment with
someone at the Texas Oncology group attached to the hospital. I went up to
Dallas and was with him when he was diagnosed with Chronic Myelomonocytic
Leukemia (CMML). The results of a bone marrow biopsy showed his “blast” cells
(immature, pluripotent immune cells that differentiate into the five white
leukocytes) were at around 18% of his marrow cells. Normal is around 1%. So,
his case was fairly advanced and they decided to begin treatment the next
week. Five consecutive days per month of Decitabine followed by three weeks
off. I stayed with him the first week and we hung out, talked and went to do
things around town.
Since then, his treatment has gone well. His immune system responded well to
the treatment. His blast cells were back down in the normal range after two
rounds. At that point the doctors started talking about the “cure”. He would
need a bone marrow transplant to kill the cancerous marrow and replace it with
something that wouldn’t produce white cells without bound. This has been very
scary for him because there’s no going back. There’s no modulation. You kill
the host immune system and replace it completely. And even if it works you may
still have to deal with rejection issues. Graft vs. Host Disease (GVHD) is
what happens when the new immune system decides that the entire host body is
foreign and mounts a “defense”. Symptoms can be mild and manageable or severe
and require extensive medication and medical care.
While all of that is going on my very good friend with whom I brew beer and
whose wedding I was in was getting ready to go to a conference in Brazil with
his wife. A week of work and a week or so of vacation with their friends who
live in Rio. On the morning of the flight, he didn’t feel good and went
downstairs to have a coffee and breakfast and to walk it off. A few minutes
later she heard a crash downstairs and he didn’t respond to her yelling down
the stairs if he was OK. She ran down and found him seizing on the living room
floor. A 911 call summoned EMS and he was taken to the hospital where they
found a mass in a head scan.
Further tests determined that there was a 6cm x 2cm – ish tumor in his right
frontal lobe. He was released from the hospital after a few days with some
anti-seizure medicine, some steroids for swelling and ultimately a date with a
neurosurgeon and a neurooncologist. He is a scientist and knows other
scientists in a wide variety of fields. He got high resolution MRI scans and
some fMRI scans of tests done while he was performing cognitive tasks. And
then he went into surgery. They removed a significant part of his right
frontal lobe but could not remove all of the tumor because a small part was in
the right temporal lobe. The frontal lobe is less important and the left side
can compensate for the loss of function. The temporal lobe is more important.
Biopsy results from the surgery produced a diagnosis of oligodendroglioma
classified at stage 2 post-surgery. So, chemo only, no radiation. But because
it is a slow growing tumor and the blood brain barrier is pretty good he will
have to be on his chemo for at least a year. It has been less easy for him
than my dad’s chemo was for him. Nausea, loss of appetite, and other issues.
In the mean time dad had been off interviewing transplant doctors and getting
consultation at MD Anderson. Dad selected a doctor at U.T. Southwestern in
Dallas to do the transplant and I went up for a meeting where they were to
discuss the transplant and post-treatment care. During this meeting she said
she had had his original biopsy from April reanalyzed and had decided that he
should be reclassified as having Acute Myelomonocytic Leukemia (a blast cell
count of 26% rather than 18%) and that this might afford different treatment
options.
AMML is often treated with a heavy dose of hard chemo to bring the disease
under control and into “remission” and then a round of consolidation chemo
which aims to knock out the cancerous marrow and let the normal marrow
recover. She gave this option a 35% chance of success compared to the 65%
chance from transplant. However, the transplant could be done later if the
chemo-only route failed. However this was dependent on finding certain genetic
markers via a broad spectrum analysis by FoundationOne.
While all of that was going they started the donor search. How to find a
donor? There is a national registry which I put myself on for preemptive
karma. But the preference is to find a sibling. Siblings are much more likely
to match on the Human Leukocyte Antigen matching scheme and there are
generally better odds of success. He has two brothers and a sister, all of
which are younger than him. One brother is out because he has already had two
cancers, one of which was treated with radiation which disqualifies you.
Radiation is a common cause of Leukemia which is what the writers call irony.
The other brother, the youngest, was not a match. The sister however was a
perfect 10/10 match.
She had had Hepatitis C for most of her life. A new drug was released at the
end of 2014 (Harvoni, I think) that had a very high rate of cure. She took the
12-week course and was declared virus free early in 2015. So, six months
later, she no longer has an incurable, blood transmissible disease and is a
perfect match and the doctors at UTSW are willing to use her as a donor.
After a month or so the results came back from Foundation. Rather than have
good markers increasing the chance of chemo-only being successful, he had bad
markers which took the option off the table. Back to the transplant. A
schedule was made.
About this time we heard that a friend who had moved away after grad school
had landed a job with Austin Community College at their new Hays campus and
would be moving back. Good news this year finally! When I heard this I
thought, “I wonder if she could get a house down there instead of renting” so
I started looking at Zillow to see what was available. Of course, Zillow is a
trap and it wasn’t long before I was looking in the neighborhoods I like in
central Austin for things for me.
As an aside, she didn’t want to live in Buda and ended up getting an apartment
in Austin north of Ben White which only qualifies as South in that it is south
of the river.
I have been saving to move into town for four years. My commute is 26 miles
each way, every day and traffic can make that a 1.5 – 2hr per day proposition
depending on when I leave. It is awful. I spend, by my calculations, two weeks
of full 24 hour days commuting every year. What would you do if you had two
extra weeks of your life every year? It keeps me from doing things and is
generally terrible. Four years ago I changed my direct deposit to put a cost
of living amount plus a few toys or trips here and there in my checking
account and the entire rest of my paycheck, more than 50% goes into savings.
Every raise and bonus has also gone to the house.
When I was browsing I saw a great place in the Rosedale neighborhood. It’s 3.1
miles from work. It’s about the size I want. It is architecturally
interesting, three stories, open plan and otherwise great for me. But it was
more than I felt I could afford. Dad had introduced me to his friends who are
building houses in their retirement and I asked them for their agent’s name
and got him to take me to the house to look around. I wanted it but it was too
much so I told him I would just wait since the owner had recently lowered the
price for the third time. I figured he’d get some interest, that would be
that, and I could go back to saving. The original plan was for five years, not
four. But no offers came and my agent got him down even more, to a price I
could tolerate if not actually be excited about.
On October 8th I went under contract and started all the inspection due
diligence and other stuff needed to buy a house. I applied for a loan which
involved summoning up a mountain of financial records and releasing the locks
I have on my credit reports. The inspection came back OK so I decided to
proceed. The house appraised for what I was buying it for. I performed the
excruciating task of shopping for insurance including reading the actual
policy contracts which even my company’s CEO, a lawyer, said “I read
everything I sign and I don’t read those anymore”. The song has been sung, the
dance has been danced and tomorrow morning at 9:30 I close on my new house.
While that’s been going on my friend’s chemo has been going along. They
got good news from their Foundation analysis in that there are a couple of
mutations that mean some ancillary treatments are possible. And on November
2nd, my dad checked into the U.T. Southwestern hospital to begin his
transplant. He had five days of a different chemo than he’d been having and
then one day of some really nasty stuff to finish the marrow off. His sister
started treatments to cause her to produce a large number of immune stem cells
and then she had a port installed and was hooked up to a blood apheresis
machine to separate out the cells they needed. Two days of that matched up
with dad’s end of chemo and one rest day and they transfused him on November
10th. The doctors and nurses referred to it as his second birthday. I went to
visit him last weekend and I’ll be going back up next week after I’ve closed
on the house. I’ll see him and my aunt who gave this gift of a second chance
and the rest of my family who is all coming in to Dallas to celebrate
Thanksgiving.
It will be good to see everyone and to be reminded of all of the things that
are good about life after the difficult year behind.